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Posted 6/22/2008 1:47 AM (GMT 0)

Over the past years I have been reading different message baords regarding Hepatitis C.  Back in 1997 when I found I had Hepatitis C there was not as many as there is now.  Matter of fact, there was not too much information out there floating around about this virus.  When I was diagnosed I had no idea why I was feeling the way I was.  The itching began first, then my feet and legs began to swell, my urine was a dark brownish color and my hands had red splotches.  I have had three chidren, all are adults now, and with 2 of my pregancies I had horrible itching problems.  So bad that I brusied myself and there was nothing the doctors could give me to stop it.  Just delivering the babies stopped the itching.  So in March of 1997 after going to 2 regular doctors who told me that I must have dry skin, I decided to go to my Gyno to be checked out figuring that if this is the same itching that I had well I was pregnant then it must be hormonal.  I was desperate, I was going crazy with itching and swelling.  She did a bunch of tests and what came back was I had Hepa*** C.  Took me by surprise because my older brother had Hep C and actually just had a liver transplant the year before and I never thought to call him regarding my symptoms. I decided to go to the specialist doctor my brother went to, Scripps in San Diego.  I did a liver biopsy which came back Fibrosis, stage 2.  Doctor was surprised because of my symptoms, but within a three months the symptoms went away and I was feeling like nothing was wrong.  The doctor and I decided to wait on treatment because new drugs were on the horizon which meant that you did not have to take a shot everyday.  I felt good, did regular blood tests and just thanked God that I was doing well.  A few years later I went through another episode, which lasted about 4 months.  These episodes would just come and go.  I again decided to wait on treatment.  My brother passed away from Hep C attacking his new liver in 2002 and again that year I had another episode.  I decided to go to a doctor that was closer to my house and this time I went on treatment.  Pegasys came out and that was the drug of chose.  Treatment wasn't a walk in the park but it was not as bad as I thought it would be.  At 12 and 24 weeks I was not a responder so doctor took me off treatment because my platelets were dropping too low.  I again felt great and went in for regular check ups.  In 2004 doctor gave me the FibroSURE test which indicated stage 4 cirrhosis.  Doctor told me there was nothing more he could do for me and I should start researching clinical trials.  I was astonished, what was I going to do. Sometime in early 2000's my mother found out she had Hep C and in 2004 she passed away from liver problems.  That is when I went back to Scripps with my tail between my legs and asked to be put back on treatment to help protect my liver from any further damage while I waited new drugs to come out.  I began treatment again, this time with new symptoms, such as horrible spasms and cramps in my legs, ankles, hands and feet.  I went in for regular blood work, my platelets kept dropping but never dropped below 50,000 so we continued on with treatment.  For the cramps the doctor prescribed me Quinine.  Well, that is when everything turned bad.  The Quinine caused ITP, which is basically a antibody you have that begins to destroy platelets.  I already had my spleen capturing the platelets and now they are dropping and dropping.  I went in one day to doctor and they were at 1000.  I thought it was an error, it must be 10,000.  The coordinator for the treatment progam and I both must have thought that because Iwas sent home with them being so low. I actually went to the Angel baseball game that night with my nose constantly bleeding when ever I looked down.  By Monday morning my gums were now bleeding and I had red blotches on my legs and hands, petechiae. The doctor called me and told me to drive the 2 hours to Scripps and do not forget my tooth brush.  I was in the hospital for 14 days and 9 of them were in ICU.  That happens to be the first time I ever experienced any type of encephalopathy.  I knew something was wrong when I couldn't figure out the remote in the hospital, I couldn't read a calendar so I did not know what day it was and I felt like I could see through people, really see what they were all about, strange and scary.  I do not want to experience that again.  Scripps is a teaching hospital so I had numerous residents coming in to talk to me, I was a rare case and they were wriitng up a case study regarding ITP and Hepatitis C.  Finally after numerous transfusions and IVIGs my platements were up to 34,000 and I could go home.  I was on steriods for 6 months and no treatment.  Now my platelets stay around the 75000 to 80000 mark and I feel good.  I still have the weird cramps in my legs, feet and ankles but I just live with it.  Not sure if anyone else has them.  They hurt worse than a "charlie horse".  The pain is unbearable at times and brings me to tears.  I exercise 4 to 5 times a week, pilates and fitness.  I have not gone on any special diet except to lower my salt in take.  I take 4 water pills a day and have been doing that since I left hospital which is about 2 1/2 years ago.  I just did an edonscopy and a colonoscopy and found out I have large esophageal varies with high risk of bleeding and moderate rectal varices.  Doctor prescribed me blood pressure medicine to lower pressure, even though I do not have high blood pressure.  I guess he wants less pressure because of portal hypertension.  That is where I am at today.  I see doctor on Tuesday to go over results and find out what it means to have varices.  That is what began my new search on the web for information and I found this site.  Sorry for the length of this message ... this is the first time ever that I have wrote about myself and this virus and the first time I ever have told other people other than my family.  Feels good to get it all out.  If anyone has info on varices or the horrible spasms/cramps in the front part of your leg (shin area), ankles and tops of feet I would really appreciate to hear from you.

Nikki

Posted 6/22/2008 2:38 AM (GMT 0)
Hello Nikki and welcome to HealingWell,

Boy you been through the wringer with this disease.

First of all the cramping maybe caused by the water pills. In this case you are darned if you do and darned if you don't. You need the water pills to control water retention. When you pass fluid too quickly it can cause cramps.

Funny you should mention about the Quinine. They gave that to my husband for his cramping also. He went down hill fast after that. I did not know what it could do with the platelets. Never realized that it could have contributed to his fast decline. Apparently neither did his transplant team. Because they didn't take him back off of it .

A transplant coordinator explained to me that varices are when your blood vessels develop weak areas from too much pressure. Your liver is damaged and the blood is not flowing through it like it should. So it tries to find new ways to keep circulating. The weak spots kind of balloon out. And if it gets too weak it can burst like an aneurysm. So they band them to try to keep them from bursting. My husband was banded twice. It worked for him.


Hope this helped.

Come back anytime........our members are unparalleled in the compassion and live disease education department.

Thoughts and prayers
Posted 6/22/2008 8:35 AM (GMT 0)
Hi Nikki,

Sorry that you are one of us patients. You have had your plate full. Welcome to the forum. I hope that it helps you as much as it does me. To be able to talk with people who understand is invaluable. I'm a Hep C, 'end stage liver disease' patient. I can't have treatment until I get a transplant. My platelets have only gone down to 9,000 and generally hover between 20 and 30.

Regarding cramps and what I call 'phantom pains', I use bananas. Diuretics or even drinking too much water strips the potassium from one's system. I use the bananas to get potassium back into my system. The potassium pills do the same thing. Please check with you doctor before making any decisions.

I still get occasional nights where my body goes crazy but balancing my fluids and bananas seems to have helped.

It's about my bedtime so I must sign off.

Wishing you well, John

If you know Encinitas, give my regards to Stone Steps. Back in the 70's I was in the house at the top of the steps.
Posted 6/22/2008 7:35 PM (GMT 0)
Thank you both for your replies. I have thought for a long time that the cramps was from the diuretics. My potassium and magnisium levels are fine, but it wouldn't hurt to eat a banana to see if it would help. I actually find out that if I press certain pressure points on the bottom of my feet or in my ankles I could begin a cramp up my leg or in my foot. Not that I want to, but I experiment things like this to see if I could figure out the problem.

After I read my message it seems like I had a lot to contend with, but I do not feel it. I feel good the majority of time and take things like getting a fever for no reason, cramps etc. as part of it but don't dwell on it too much. I have read a lot of other messages and realize that there are many sick people out there fighting this virus. I feel lucky with the little things that I go through compared to some. I pray for anyone suffering with is horrible virus.

I know how I contacted the virus, 17 years old and stupid ... growing up in times where I thought I ws invinsible and that using drugs and needles wasn't going to hurt me. Go 5 years down the wrong path and realize that my child was being affected so just up and quit one day. That was 32 years ago. Then 10+ years ago you find out that you can make decision so long ago that really will effect the rest of your life. If I wanted to see something positive about this whole virus thing is that is has given me the vehicle to help my children, some of their close friends and hopefully my grandchildren to be careful about the decsions they make in life especially during the teen and early 20 ages when you feel so invinsible and you feel you know everything.

So far this message board has helped me understand more about what real people go through dealing with this virus, from actual carriers to caregivers. I pray that I will not be a burden to my loved ones and that I will beat this "dragon". I have lost 2 loved ones to this virus and I do not plan to make it three. After reading some of these messages I think I will talk to doctor and ask to be put on treatment again. Even if I do not get a postiive reposnse it will help protect me from any further damage until something new comes along. I think that is a true statement. As for the varices, I will wait until Tuesday and see what doctor has to say. I feel good and that is what matters right now.

Thanks again for your responses and I will continue to learn what I can.
Posted 6/22/2008 8:21 PM (GMT 0)

Hi Nikki

First I want to welcome you to this forum.  I am a caregiver for my husband who has end stage liver disease.  You are the first person that I have seen on this forum to talk about the muscle cramps like my husband had them.  I can tell you he spent at least 6 months with the horrible pain of those things.  We would both be up many night trying everything under the sun to stop them.  I would have to rub and rub while he screamed.  He tried the banana think but it didn't work for him.  I even tried potassium pills which I got yelled at by the Dr.  Everytime he got them his numbers were OK.  I think there were two different time he was in the hospital when they hit and it was unreal.  They had to give him demerol which turned him in to a zombie to make it bearable.  After he went to Vanderbilt they started giving him Albumin before they tapped him and that has done the trick.  He still gets them sometimes but not near what they were.  Also a kidney Dr. told us they were having good results with Klonopin.  They give it to people with restless leg syndrome.  It has also worked some.  Just a little insight.  Hope this helps.  Read through some of the old posts and you will learn a lot. Hang in there.

JoAnn

Posted 6/22/2008 9:38 PM (GMT 0)

Hi, Nikki!  Welcome to the forum!  You have been through a lot with this disease, but I'm glad to see that you are a fighter and also that you educate yourself.  Very important!

I, too, contracted hep C from IV drug use back in the 60s.  Who would have thought that in '93, after being clean for 24 years, this problem would surface!  Just goes to show, you don't really get away with anything in this life.  eyes   Fortunately, I had already stopped drinking alcohol, in '86...otherwise, I probably would not be alive today.  I also had problems with treatment...but am thinking of trying again with the new drugs.  However, I did develop liver cancer as a direct result of hep C.  I knew it was a possibility, so I wasn't shocked.  Mayo Clinic saved my life, literally.  They did a liver lobectomy of the rt. lobe, and a biopsy of the left showed mild cirrhosis.  I also developed an incisional hernia, which was repaired in Dec. '07, but came back even larger a couple of months later.  I am now 3 weeks post-op from the last repair, and having problems with ascites and drains.  I'm on a large dose of diuretics now, but they may place another drain this coming week.  From the time I was first diagnosed with C in '93 until about 2 years ago, I felt fine except for extreme fatigue.  I did have bilateral hip replacements due to osteonecrosis (supposedly from previous years of heavy drinking), starting in 2002, with the left one redone twice.  I also stopped smoking 5 1/2 years ago.  Since the cancer diagnosis, I am eating mainly fruits and vegetables, with eggs, beans, and cheese as primary protein.  I have meat about twice a week, but rarely beef (hard for a sick liver to process.)  I started drinking green tea two years ago, instead of coffee, and I drink a lot of spring water now.  Despite my problems with fluid retention, I was told to stay hydrated.

I've had cramps in my toes when I'm lying in bed at night, but they go away when I get up and walk a little.  I mentioned it to my surgeon, but he really didn't comment on it.  I suspect the diuretics, although I'm on a much larger dose now and so far (knock wood!) no cramps.  The Aldactone supposedly counteracts the potassium loss from the Lasix.  I had a terrible time swallowing those huge potassium tablets.

I hope you will continue to come here and share your experiences with us, or just vent if that is what you need to do.  We are all here for you and for each other.

Warm hugs,

Connie

Posted 6/23/2008 5:16 AM (GMT 0)
Connie, My brother in law switched to an Herbal Tea when he was diagnosed with liver cancer. They gave him 6 months with treatment. He opted out of treatment, he excercised and used "Jonathan Winters Organic Tea" ( not the comedian) He went almost 2yrs his cancer was beyond surgery or really any treatment but his quality of life was good and active. Everyone but the DRs think it was the tea.
Sue
Posted 6/23/2008 7:54 AM (GMT 0)
Hi Nikkie:

Wellcome to the forum:
I can't even compare to what most of the people on this forum have been through or are going through. I am trying to keep informed of what's to come. I can't comprehend how two of your family members have already passed on with liver disease. I have ESLD at a grade 3 of 4 , stage 4 of 4. Fortunately for me, I so far, only have the encepalopathy which is being treated with lactulose. Had it not been for the encepalopathy experience, I probably would never have found out I had end liver disease , Don't have hepatitis B or C, had A as a child but they say that is unrelated . Since I rarely drank, smoked or did drugs of any kind. They can not figure out the cause. Especially since they figure out it must have been on going for many years. So it is an unknown Cryptogenic Liver Disease. I am really frightened when I read the forum. But like I said I want to know what I am in for . Keep posting the people here are really great. june
Posted 6/25/2008 12:48 AM (GMT 0)

Hello Nikki, and welcome to the forum. 

 

I'm a caregiver for my husband who has ESLD, and while I can't help with the cramps, I can with the varacies.  As Pink Grandma said, it's blood vessels that develop in weak areas.  Left untreated, they become engorged with blood and rupture.  When that happens, you hemmorhage.  Should you ever vomit up stuff that looks like coffee grounds, or your stool becomes black and tarry, get to the hospital as quickly as you can.  They'll do an endoscopy and band the 'bleeds', pump you full of Lactulose so you pass the blood in your belly and you'll be fine.  Brian bled so badly one time (last Oct) that they banded him 6 times.

 

Anyway, I hope this helps you, you'll be in my prayers.

 

Hope~

Posted 6/25/2008 3:46 AM (GMT 0)

Nikki, I hope you will come back and post and let us know how you are doing.  I spoke too soon earlier--I am now having cramps in my toes and feet when I lie down.  It happened this morning and again this afternoon when I lay down for a nap.  I took a 10 mEq potassium tablet.  I think that will stop the cramps.  It's likely a loss of potassium through the diuretics, but you can also have low potassium due to not getting enough in your diet.

Hugs,

Connie

Posted 6/25/2008 7:28 AM (GMT 0)
Connie;

I used to take those (horse pills) potassium pills K-Dur. Twice a day. Then I was switched to spiranolactone , now my potassium is fine. Wish I could remember the name of the diuretics I was taking. I just flushed a 6 month supply a few days ago. I wish I could find a place where they would accept them for a needy patient. You have no idea how many pills I have thrown. Usually a 6 month supply because thats the way they are sent to me by mail . I am often allergic to some of the meds. I have tried.

june
Posted 6/25/2008 7:34 PM (GMT 0)

June, I'm on 200 mg a day of Aldactone now, along with 60 of Lasix.  However, I had no more cramps after taking the potassium (horse) pill.  I noticed the last time I was in the hospital, my potassium was also low and they were giving me a supplement through IV.

Connie

Posted 6/26/2008 8:16 AM (GMT 0)
Connie, I am only taking 25mg of the spra.,,, and no additional potassium except what is in a mult. vitimin.So far it's been about 6 months and my potassium levels were fine. I never had cramps or any symptoms when my potassium is low. It just shows up on blood work.
june
Posted 6/26/2008 10:06 PM (GMT 0)

June, what they have me on now--60 mg of Lasix and 200 mg of Aldactone--is way too much.  I started having toe cramps again, and both yesterday and today I've felt nauseous with no appetite.  I've been drinking green tea and herbal tea, which has helped some.  I've now cut back the Lasix to 40 mg and the Aldactone to 100 mg.  I think I was becoming dehydrated, despite drinking a lot of liquids.  I can't see that the higher dose was decreasing the fluid pocket in my midriff anyway.

Hugs,

Connie

Posted 6/28/2008 7:01 AM (GMT 0)

Well, Tuesday was my doctor's visit so here is my update.  Varices are large and spotted.  I am taking 20 mg of Inderal, 1 10mg tablet twice a day.  Doctor wants me to slowly increase dosage to the maximum I can tolerate.  He told me that he would like to see me taking 80 mg but that most people can not tolerate that amount.  He told me there was no goal pulse rate, just the more I take the lower my pulse and the chances of a bleed go way down.  As for treatment again, he said "no way".  He is afraid to flare up my ITP again so he wants me to just wait it out.  He figures in about a year and half there will be a new drug out, one that they are currently testing, and that I may be able to go on that, even though it is currently being tested with Interferon.  He would really like to see 2 new drugs to come out then I would not have to worry about going on Interferon since that is what he thinks caused the ITP... even though at the time of my hospital visit they thought it also could be the Quinine.  So who knows?  As long as my liver is still functioning then just keep on keeping on.  Now it is "don't gain alot of weight and keep yourself fit".  I guess that is good news, but I was little disappointed because I thought maybe going back on treatment might protect me from further damage.  Doctor said they have found out after a 5 year study that "maintenance" treatment really did not make much of difference in the patient's outcome, damage and progression so they have removed the majority of people off maintenance treatment figuring why put them through all the symptoms.  Has anyone else heard this?  Well, I am lucky that I still have a functioning liver.  So I will continue to research and learn and stay as fit as I can.  Even though I get real tired of working out and exercising.  Maybe tired is the wrong word, I get fatigued. 

I am eating a banana every night to see if it may help the cramps in my feet, toes, ankles and shins.  The last 5 nights have been horrible. Every night I have had these cramps and it seems like nothing I can do, even trying to walk it off, makes them go away.  You just have to wait it out, so I just pray for relief.  Thank all of you for all your suggestions and help. 

Posted 6/28/2008 9:39 PM (GMT 0)

Hi Imlucky2 

My husband had those horrible cramps for months.  His blook work showed that there was no problem with Potassium.  Never has been.  No reason why they have stopped also.  We tried every thing.  The walking helped some but how can walk around 24/7.  I got one of those hand held vibrating machines for his back.  We would turn it on and hold it on his feet and his hands when I couldn't stay away to rub.  It did help. I got it at Wal Mart and I don't think it was very expensive.  We were so sleep deprived we were willing to try anything.  Thought I would share that with you.  Keep your chin up.

JoAnn

Posted 6/28/2008 11:09 PM (GMT 0)

Nikki, thanks for the report.  I suppose, overall, that is a good one.  I, too, wish they would come up with an alternative to Interferon.  I tried treatment with that twice, and both times my white cell count dropped so low that I had to be taken off treatment.  Now, the hepatologist I see says they have drugs to counteract that, and she is very much in favor of me trying the combo treatment.  However, due to the 2 hernia surgeries, and now problems with ascites, the pretesting has been put on "hold." 

I don't think a banana will do much good in terms of stopping your cramps, even if the cause is low potassium...simply because there's not enough in one to be of any help.  My toe cramps have eased up since I lowered the dose of diuretics.

Good luck to you and keep us posted on your progress!

Hugs,

Connie

Posted 9/18/2008 6:00 AM (GMT 0)
My uncle had faced the same problem after several months he used to take treatment and slowly he is recovering but again from two months he is suffering with pain.Is there any better treatment for this?
----------------------------------
Gary Bristow
california dui
Posted 9/18/2008 10:14 AM (GMT 0)
Hi Nikki and welcome to the forum

I have had the kind of leg/feet spasms that you are describing but they have went away for the most part. My potassium levels were fine while these were occurring. I know i tried wearing different shoes, ect but nothing seemed to work. However I did try the back massager that Joann described and ben gay type ointment and it would relieve it to a bareable point. Good Luck in your journey.

Lucy
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